The roller coaster continues. Owen was exposed to a virus and has been sick for 13 days now. We have been a mess worrying about how well his body can fight off the virus since he is still on immunosuppressants. It’s difficult to see him not feeling well, but luckily he has been able to continue to be at home and continues his outpatient visits to the day hospital. Owen’s IGG level was too low and the decision was made to restart monthly IVig transfusions (other people’s antibodies) that will continue through the entire winter. We continue to struggle seeing him get stuck by needles and going back to needing IV’s placed while at the hospital.
This time of year is especially difficult. It’s still so fresh in our minds how we spent last Thanksgiving in the hospital and last Christmas not knowing if Owen would survive after another round of ATG, chemo, radiation, and his bone marrow transplant. Although he is sick, we are so grateful to be in a much more stable place with him. As Christmas approaches, we have been trying to focus on our gratitude for all of those who have donated and kept Owen alive with blood, platelets, and antibodies and for Owen’s hero donor who saved his life with his stem cells. Our hearts are heavy with the memories of the children we’ve known and lost over the past 2 years and pray for all those still battling, just like Owen. Holidays in the hospital are difficult on all families. A huge thanks to all hospital staff and thank you to all those who donate their time to bring some cheer to patients and their families